Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for May 2021

Sweating

Hi, I am 84 patient with CLL on imbruvica( 1day) Blood test are good. Can anyone discover reason for sweating being in doors in about 24degrees Troon...

Hi, I am 84 patient with CLL on imbruvica( 1day) Blood test are good. Can anyone...

Lene84

•3 years ago

3 Replies

CLL Ireland and CLL Support First Joint Webinar

Our first joint webinar! 31 May 6.30 pm - 8.00 pm London (1.30 pm EST) We are very pleased to announce our first joint webinar with CLL Ireland. We are...

Our first joint webinar! 31 May 6.30 pm - 8.00 pm London (1.30 pm EST) We are...

UK-Sparky

•3 years ago

Be the first to reply

Big Pharma Pushing CLL Drugs On US Television!! Buy! Buy!

Why is it if you are a drug dealer pushing drugs that you go to jail... but if you are Big Pharma you can go on national TV and push them with impunity???...

Why is it if you are a drug dealer pushing drugs that you go to jail... but if y...

DanBro1

•3 years ago

24 Replies

Want to take advantage of all our features? Just log in!

How to read antibody results?

Hi all, I am very happy to have developed antibodies, 4 weeks after my 2nd Pfizer BioNTech shot! The lab results show “>2080,0 UA/ml”, and the control, or...

Hi all, I am very happy to have developed antibodies, 4 weeks after my 2nd Pfize...

Etoile7

•3 years ago

1 Reply

Mutated p53 gene

Mutated p53 gene? My dad has been told he has a mutated p53 gene (i think that’s right) and that his treatment will be either ibrutinib or another drug I...

Mutated p53 gene? My dad has been told he has a mutated p53 gene (i think that’...

Tomaitch21

•3 years ago

4 Replies

Mutated IgVH

So my clonal gene belongs to the VH-4-30-2 family. Is there anyone else out there with the same? If so, please message me directly if you are so inclined....

So my clonal gene belongs to the VH-4-30-2 family. Is there anyone else out ther...

Luap001

•3 years ago

1 Reply

Shingrix and CLL

I am a CLL patient in W & W. I am wondering if I should get the Shingrix vaccine. If yes, I received my second Covid 19 vaccine in April and wondered if I...

I am a CLL patient in W & W. I am wondering if I should get the Shingrix vaccin...

Sweetbaboo

•3 years ago

28 Replies

When Ibrutinib side effects become too much

I’m wondering what were the breaking points when people taking Ibrutinib decided it was time to make a change to another drug or drug combo and did this...

I’m wondering what were the breaking points when people taking Ibrutinib dec...

Mprm

•3 years ago

42 Replies

Covid antibodies

I got back my test result with 1036 AU/ml. Cut-off is 50, so this is clear positiv. Test was done by CMIA Abott SARS-Covid-2 IgG II Quant Assay and it was...

I got back my test result with 1036 AU/ml. Cut-off is 50, so this is clear posit...

Reinhard

•3 years ago

9 Replies

May 27th Webinar: GettingMaximum Benefit Out of Doctor Appointments! Put together this little gem of a package and take it with you.

May 27,2021 Webinar: Getting Maximum Benefit from Doctor Appointments. Caregiver Steve Delesie has EVERYTHING important about his wife's CLL journey at his...

May 27,2021 Webinar: Getting Maximum Benefit from Doctor Appointments. Caregiver...

bkoffman

CLL CURE Hero•3 years ago

1 Reply

Roundup settlement for CLL

Does anyone have any experience or information on being part of the Roundup/CLL legal settlement? I’ve used it around the house for years and was diagnosed...

Does anyone have any experience or information on being part of the Roundup/CLL ...

Warheart

•3 years ago

45 Replies

The High Cost of Cancer Drugs Explained Clearly

Next time you hear about how the drug companies justify the high cost of drugs, such as Imbruvica, you should consider the content in this video....

Next time you hear about how the drug companies justify the high cost of drugs, ...

Indolent

•3 years ago

11 Replies

Cll and covid positive

Did anyone here test positive for covid19 and recover from it?

Cllquerist

•3 years ago

38 Replies

Did you find out you “had” CLL long before it was diagnosed?

Wonder how common that question is to this group? ... and if you fall into that category what kind of reaction or thoughts came to mind? Reason I ask is, I...

Wonder how common that question is to this group? ... and if you fall into that...

Pin57

•3 years ago

26 Replies

This is more evidence that those of us on ibrutinib could get better outcomes if we contract covid 19

https://lymphomahub.com/medical-information/immunological-effects-of-ibrutinib-for-patients-with-cll-and-covid-19

https://lymphomahub.com/medical-information/immunological-effects-of-ibrutinib-f...

zaax

•3 years ago

6 Replies

Keeping track of lab results

Keeping Track of Lab Results: Look for trends. CLL Society makes it easy!...

bkoffman

CLL CURE Hero•3 years ago

1 Reply

Imbruvica muscle and joint pain

Want to try calquence because of joint and muscle pain on Imbruvica. Was told I would have to stop Prilosec. I tried to stop it previously and was miserable....

Want to try calquence because of joint and muscle pain on Imbruvica. Was told I...

pianogal

•3 years ago

14 Replies

Small COVID Vaccine Study Observations

This is an excerpt from a small study published last week by three CLL specialists including Dr. Mato: Anti-SARS-CoV-2 S1/S2 antibodies were detected in 17/18...

This is an excerpt from a small study published last week by three CLL specialis...

Luap001

•3 years ago

4 Replies

Ibrutinib to Acalabrutinib

After more than 4.5 years on Ibrutinib, I was switched to Acalabrutinub 6 days ago. I started having diarrhea the 6th night and had a headache about 4:00 a.m....

After more than 4.5 years on Ibrutinib, I was switched to Acalabrutinub 6 days a...

Agatesup

•3 years ago

15 Replies

Vaccine response with MRD negative status?

I was on the AVO trial at Dana Farber and achieved MRD negative status after 1.5 years. I have been this way for about 9 months now. Received the Modena...

I was on the AVO trial at Dana Farber and achieved MRD negative status after 1.5...

Pete9876

•3 years ago

19 Replies

CLL Astra Zeneca and blood clots

Is anyone aware of increased risk of clots in CLLers who have the AZ vaccine?

shazzy57

•3 years ago

2 Replies

NIH Study tracking Vaccine response/multiple disorders

https://www.nbcnews.com/health/health-news/covid-vaccines-may-not-protect-people-immune-disorders-nih-trial-n1266886

https://www.nbcnews.com/health/health-news/covid-vaccines-may-not-protect-people...

Txkate

•3 years ago

1 Reply

Trying to figure out blood results?

Hi, I have my first appointment coming up with a specialist in Boston next week. These labs truly are a foreign language to me. I’m thinking it’s good because...

Hi, I have my first appointment coming up with a specialist in Boston next week....

Bikram21

•3 years ago

10 Replies

Restarting HealthUnlocked Daily Email

My daily HealthUnlocked email stopped last week. How do I restart it?

wmay13241

•3 years ago

1 Reply

An unreviewed paper says that the efficacy of a 2nd Covid jab on cancer patients is as good as the general pop'n. Anybody know more?

https://www.theguardian.com/world/2021/may/18/96-of-britons-develop-antibodies-after-one-covid-jab-study-finds Paragraph 12 says: "Antibody levels after one...

https://www.theguardian.com/world/2021/may/18/96-of-britons-develop-antibodies-a...

Quercus_robur

•3 years ago

1 Reply

Persistence of functional memory B cells recognizing SARS-CoV-2 variants despite loss of specific IgG

https://www.medrxiv.org/content/10.1101/2021.05.15.21257210v1 To too sure what this mean for us.

https://www.medrxiv.org/content/10.1101/2021.05.15.21257210v1 To too sure what t...

zaax

•3 years ago

Be the first to reply

CLL and Vaccine response

Here’s a paper from Cold Spring Harbor about CLL patient antibody response from Pfizer - it admits its own limitations but the evidence is pretty stark so far...

Here’s a paper from Cold Spring Harbor about CLL patient antibody response from ...

Ptcad

•3 years ago

Be the first to reply

Antibody test after vaccine

My wife has CLL and has been on watch and wait for the past 4 years. She is “lucky” that the regular tests always come back with no additional treatment. After...

My wife has CLL and has been on watch and wait for the past 4 years. She is “luc...

davidinharrow

•3 years ago

2 Replies

Venetoclax and covid jab

I have been on Venetoclax for 16mths now. All going great. I see my haemotologist to morrow and will be asking about Covid vaccine. The last time I saw...

I have been on Venetoclax for 16mths now. All going great. I see my haemotolog...

nuttynannie1947

•3 years ago

8 Replies

ARTICLE ABOUT CLL PATIENTS AND COVID VACCINE RESPONSE TODAY IN WASHINGTON POST

Article today from the Washington Post about immunocompromised and the covid vaccines lack of effectiveness. Not good news but suspected....

Article today from the Washington Post about immunocompromised and the covid vac...

Palmetto

•3 years ago

3 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2021

Sweating

CLL Ireland and CLL Support First Joint Webinar

Big Pharma Pushing CLL Drugs On US Television!! Buy! Buy!

How to read antibody results?

Mutated p53 gene

Mutated IgVH

Shingrix and CLL

When Ibrutinib side effects become too much

Covid antibodies

May 27th Webinar: GettingMaximum Benefit Out of Doctor Appointments! Put together this little gem of a package and take it with you.

Roundup settlement for CLL

The High Cost of Cancer Drugs Explained Clearly

Cll and covid positive

Did you find out you “had” CLL long before it was diagnosed?

This is more evidence that those of us on ibrutinib could get better outcomes if we contract covid 19

Keeping track of lab results

Imbruvica muscle and joint pain

Small COVID Vaccine Study Observations

Ibrutinib to Acalabrutinib

Vaccine response with MRD negative status?

CLL Astra Zeneca and blood clots

NIH Study tracking Vaccine response/multiple disorders

Trying to figure out blood results?

Restarting HealthUnlocked Daily Email

An unreviewed paper says that the efficacy of a 2nd Covid jab on cancer patients is as good as the general pop'n. Anybody know more?

Persistence of functional memory B cells recognizing SARS-CoV-2 variants despite loss of specific IgG

CLL and Vaccine response

Antibody test after vaccine

Venetoclax and covid jab

ARTICLE ABOUT CLL PATIENTS AND COVID VACCINE RESPONSE TODAY IN WASHINGTON POST

Search posts

Pinned Posts

Latest poll

Part 2 of How well do you know HealthUnlocked's features? Rate yourself on this multichoice poll. Answers later or you can check Help!

Topics

Archive